Missing Out on Christmas with Narcolepsy

Yes. Y’all aren’t alone. Napping at my parents on Christmas while there was a party downstairs. Missed so much… It sucks. For a while my family and friends thought I was just not wanting to be there so actually getting diagnosed felt validating but I still feel like when I miss out, it’s like other ppl think I’m at home living my best life of Netflix and chill because I want to and it’s not like that. As a kid I would ask my mom to ground me if there was something I didn’t have the energy for because being tired didn’t seem like a solid enough reason. It’s so much harder for me to cancel plans than to figure out how to make it because of the emotional toll and I know I’ll just have to reschedule or make it up if it’s important and taking a risk of future energy doesn’t always work out with this. I feel so guilty like I was ok yesterday but today trying to put on clothes I’ve got to take a 45min break after each sock and if I take a break I may not even get back up. Desperately trying to make it to the thing and when finally am like ok I don’t have it in me by that time I’m too tired to even make food to eat and take care of myself. Happens thanksgiving last year and ended up in bed eating pretzels and cheese for dinner (love those snacks) but just felt really sad/depressing like I couldn’t even make it 10 mins down the road to my parents and I tried 6 hours. And then after ppl are like how was your thanksgiving?! Just kind of kills me like I don’t want to lie but I also don’t want to be negative. Just still haven’t found out how to answer those questions in a way that feels honoring. Very hard to explain things that seem enjoyable to others takes a lot for me and that lessens my ability to enjoy. Within the last year I’ve started skipping things I don’t really want to do to save up for what I do and try to get my family and friends to do things together that might increase my energy or keep me awake or make what I need to do regardless easier. Trying to hit 2 birds with one stone… workout w/ friend, walk w/ fam, run errands w/ someone rather than go out to eat. It helps in the long run but more work to start those things up. I just don’t have the energy for normal life but trying to make the most out of the energy I do have. Also working on explaining that and then if after ppl don’t respect that- don’t have the energy to deal with feeling guilty and obligated and not receiving help- so that’s just not going to be a person taking up space in my life. It sucks for the other person and I will absolutely hear that but it sucks more not being able to control my own body and doing my best and feeling like I’ll never be good enough because I don’t function like a normal person. That’d be so cool but that’s not what I am and I’m so tired of pretending and trying and then failing and me being left to pick up the pieces myself. Also this just happened again this weekend- missed multiple things that I actually wanted to be there for so I have a bit of a fresh wound on this subject and feel guilty that I missed out being there for people and at the same time who I asked for help were actually too busy to help me because they were out enjoying. So feeling alone because I don’t want to put my emotions on them and rain on what should be enjoyable for them just because I didn’t have the energy to but I’m still processing grieving that this is my life and I’m doing my best and my best is a pretty low bar right now.

I always lay in bed and listen to the sound of my family & friends talking and laughing in the other room while I'm struggling to stay awake. It can be upsetting because it makes one feel very disconnected from them. I barely stayed awake for long enough to do present opening this year. I'm sorry you missed Christmas but I hope you know you are not alone. I've missed many many gatherings because I was too exhausted or didn't wake up.